Anyone with UPSC Stage 1A who chose not to have Chemo?

angec said:

I am glad you chose to do

I am glad you chose to do treatment also!  My SIL is now 47 and she had stage 11 about 1 1/2 ago. The doctor didn't give her  any treatment at all! Said he would scan and watch.  She never told us she had cancer, so we couldn't tell her to get treatment of some kind.  It came back in September of last year. She had surgery and then she also had 4 rounds of chemo.  She had shrinkage but they weren't all gone. Then he put her on Tamoxafen because he said it was hormonal.  The met in her liver is gone and the other mets were shrinkig. Forward to two months later (last week) and now one met in her pelvis is growing. I believe she is stage 4.  I don't know what kind of Uterine cancer she has as she is very private.

She is seeing a new doctor and he immediately told her to take 6 weeks of daily radiation, then some chemo treatments.  I think the chemo will be in pill form. Does anyone know what pill treats the cancer? I have not heard of a pill form of chemo being used for uterine cancer, lest it be a new drug?

I am going to speak with my SIl tonight and try to help her out by doing research and just finding out more information. She is too scared and is not really being an advocate for herself. She just listens to the doctors, but is not an informed patient.

I am usually on the kidney boards helping my mom with her RCC.  I was so angry when i found out she was stage two and the doc did not give her any treatment. All along i kept saying it sounded wrong!  But I would encourage anyone, even stage one, to do some form of treatment. No one knows what is lurking.  It use to be that uterine cancer was rare and it was slow going. I don't know if that can be said anymore as I hear so many people have it and it can be aggressive.  

Incidentally, trying to work to eat healthier is the way to go as well. Someone sent me a link to this nutionist who has helped stage 4 patients stay NED.

http://www.namastehealthcenter.com/

http://namastehealthblog.wordpress.com/

I was diagnosed with UPSC stage 3-C.  I asked my doctor if I became stage 4 when the cancer went to any organs.  He said NO, I would be stage 3-C with metastasis.  So you SIL may be stage 2 with metastasis .  

A chemo pill that some others have taken is Cytoxan.  It is taken every day.   Others have taken Tamoxifen , or arimidex, or Aromasin.  These are supposed to slow the growth of the cancer.  

I am taking Aromasin.  I also had pelvic radiation asmy initial treatment.  If you knew what type of cancer she had, you could be better informed.  Sorry to hear you also have to visit thekidneyboard.  How stressful for you.  Good luck with everything.  Come back with any questions or concerns.

angec said:

To, thank you for
To, thank you for information! It is very helpful! I hope to find out what kind she has. Is it possible to become NED I wonder? The pills help to slow the growth? So it doesn't really get rid of it?

I know she had a spot on her liver and possibly the tamoxifen got rid of it? Not sure. However, I will get more info and come back. You are so helpful, I appreciate it all!

Are the side affects bad on these pills? Which one is newest and the better one with positive results?

I hope you are doing well. Are you NED now or does the med just slow it for you? Prayers going out for all!

When I was diagnosed my doctor told me the cancer was not curable, but treatable.  So I think of it as a chronic disease.  Every  time i stop chemo my marker begins to rise.  i have been off chemo 16 months and my marker is 700.  The other times I started chemo my marker was 1500 and then 3200.  i did not have a CA 125 done prior to my surgery.  

I tried Arimidex between my second and third chemo, but it did not help.  The cancer may have been too aggressive at the time I started it.  The Aromasin was started after I finished my second chemo.  My marker has risen more slowly this time.  I had 18 months chemo free before my second chemo, but only 7 months chemo free before my third chemo.  changes in CAT scans are when I start chemo again.  Luckily my changes are just enlarged lymph nodes.  

Most peple did not experience side effects from the cytoxan.  If you type cytoxan in the subject box on the first page, you will find posts regarding cytoxan.   With the Aromasin I had lots of joint pain, but it is better now.  Everyone reacts differently to the medicines, so it is hard to say how you SIL will respond.  

Feel free to come back with any other questions you might have.  In peace and caring.

mianex said:

UPSC

My mom's doctor said since it was just a polyp and it hadn't invaded any tissue, chemo wasn't necessary. We're just worried.

If it is UPSC you may want to get a second opinion from a gyn/onc.  My UPSC was a polyp they found in my uterus, and while only stage 1a, they said throw the kitchen sink at it because it is the agressive kind.  I didn't want to do the "sandwich" but if it meant beating this devil then let's do it!  Lots of written works out there that show the best way to fight UPSC is with treatment, not a wait and see approach.

mianex, I sent you a private message with a link to a good article that has been on here before. 

Kdrichards said:

Radiation

I actually just had this discussion with him last week again. He says that the current research indicates they may have been too aggressive with radiation and he prefers to monitor me closely for local recurrence and treat if that occurs. The scarcely recurrence will be elsewhere in the body from cells that escaped through the Fallopian tubes. Hopefully the Chemo will take care of those. Of course there are no guarantees. For the time being I'm OK with this treatment plan but thanks for responding. Stay well!

My UPSC was picked up on a pap smear.  Since those cells would have escaped the uterus, I wonder if it makes it more likely for recurrence at the vaginal cuff for me despite being 1a.  I never thought about it before but it seems logical.  I did have brachytherapy

debrajo said:

Connie

My UPSC was also picked up on a routine pap.  I had five brachtherapy and questioned that much rdiation, but the dr. at MD Anderson said the Cuff was a huge recurance problem. So I went with the "whole nine yards" instead of the wait and see approach.  Besides, my dr. would not even consider no radiation because of the "C" grade.  Did you have lymph nodes checked?  I didn't and it took me years to find out why.  In their words, I had too many "co-morbities" to keep me on the table...ie they were too scard I would die on them!  Best, Debra 

 

P S I have a pap/pelvic every time I go in for a check up.  They use that and ONLY the ca125.  I have not had a scan of any type in four years.

Debrajo, I see so many women here getting scans, and other than the pre surgery CT, the CT for radiation planning, and the post treatment CT I don't have scans either.  I have always been uncomfortable with radiation (I had a super hard time wrapping my head around it all) and know it can cause more problems later.

I asked my radiologist why get this treatment since I didn't own any of the equipment anymore and he told me when they see cancer come back it is at the "pouch" at the end of the vagina that is created after the complete hysterectomy.  Oh - ok, glad I asked!

I will say for the first 3 post-treatment visits with my gyn/onc he kept telling me how it was "red" so he finally took a biopsy to make sure it wasn't anything.  It is just red from the radiation and the biopsy was nothing. 

I keep count of my CTs, and remind the doctors when they want them.  These really are not good for you, so I don't run to them.

debrajo said:

Connie

Glad to see someone that is getting the same basic treatment  as I am!  I was beginning to question WHY I wasn't getting a yearly scan.  Even talked to my regular MD about it and he point-blank said too many scans ups your radiation side effects and can CAUSE cancer.  My dentist even still puts the heavy no-radiation drape over me.  I also had some of the necrotic tissue from the radiation burns, but the test came back negitive...just basic scabs.  Did they test lymph nodes on you?  I haven't figured out how you get "very optimun" surgery/debunking without taking some node, but that's what my report said!  Debra 

Debrajo, I've had no scans either, except for the one right after my surgery and before treatment. But my doctor used to work at MD Anderson (now in private practice) and follows their protocols.

She believes I would have symptoms before cancer showed up in my scans, although I know some women here have said they have had no symptoms during a recurrence. 

At the risk of jinxing myself, I'm feeling really well........and my doctor is extremely optimistic. She told me I dodged a really big bullet.

Hugs to all the brave warriors here!! 

NoTimeForCancer said:

"Robotic surgery plus"

That is what the onocologist said when she looked at my report.  The surgeon took a lot of lymph node samples, in fact, when I saw the onocologist to be released to drive I asked her if my thighs were sore from being spread during surgery.  She said they weren't spread THAT far!  LOL!!  The pain in my thighs was from they lymph node removal and he took a lot!  The pain in my thighs lasted quite a few months and I had a "phantom", similar pain earlier this year.  Weird.

I did say to my gyn/onc the other day "I feel great!  What am I supposed to feel?" 

I JUST had the same thing happen. I wondered why I had that pain in my thigh. lol.. it still tingles a bit.

Hope all is well on your end!!

Hugs,

Crystal

NoTimeForCancer said:

Lymphedemia

Crystal, if you weren't told how to prevent it, look up online to see how to prevent lymphedemia.  (or ask your doctor/nurse)  No one told me and my one leg got so swollen we did an ultrasound to make sure it wasn't a blood clot.  It wasn't but then I had a month of massage and now have  a compression garment for life.  It is not the worst, and it may not have been preventable, but I would have tried to everything to avoid this too.

No one told me so I didn't know to ask. 

I had an enormous number of pelvic lymph nodes removed and tested - 65 and 11 arota nodes.  I also have numbess on the upper thights.  almost 10 months after surgery the numbess is getting better,  Exercise helps

when i went to Dana Farber for a radiation consult the head of gynological radiology told me to definately watch out for Lympedemia.  Her words were move every day,  but more so with some good exercise that includes the legs.  She said that this would keep the circulation going and kick the lymph nodes there in gear.  I have followed this from March to today and haven't had one issue. Which is very surprising given the number of lymph nodes removed.

take care

Sharon

I am trying to decide on getting chemo and radiation that the gyn oncolgest recommends to lower my reacurence rate to 30% instead of 50% if I decide not to get the treatments but instead watch and wait. I'm going for a cat scan tomorrow to see if anything shows up. If nothing shows up I am thinking to go with the watch and see.

I have had 2 opinions from differant oncolgest and they both recommend the treatments because of the type of cancer is is and how unpredictable and aggressive it is.

My concern is other health issues that already have me in a weaken state and I'm afraid the chemo will be too hard for me to tolerate.

I have M.S. and M.G., my fatique level is already very low and I have a feeding tube because my swallowing gets weak more so when my fatique and stress levels act up. My weight is already very low for my height and I can't afford to lose anymore weight.

But after reading these post I am afraid of not going with the treatment and in 18 months having a recurence somewhere else in my body.

I don't understand the initials being used for the differant types of cancer.

I have had a radical hysterectomy to remove cancer that was in my uterous. 1a.but a Rare aggressive type.

Adencsarcoma with sarcomatous overgrowth of lsiomyosarcoma

this is what it's called on my pathogy report. I don know the initials for this type of cancer ??